My angel is Stephanie. She is 12 years old. Stephanie has CP from
asphyxiating on amniotic fluid during birth and the fact that her lungs
were not yet mature. Stephanie has a twin brother, he does not have CP.
They were born 2 months early (32 weeks). We didn't notice anything was wrong until she
was about 8 months. She was a VERY fussy baby, always crying and spitting up profusely, a
lot. We found out she had some sort of milk intolerance. We saw a pediatric
gasterenologist for many months.
This was all before we found out about the CP. What made us notice something was wrong was
that her twin was starting to do things and she
wasn't. Mainly holding her head up. We went to the pediatrician and told her of our
concerns. We had been to the Dr so many times for so many
different things. Steph was always sick and always fussy and crying. She looked at Steph
and checked her over. I will never forget the look of concern, sympathy, and compassion on
the Drs. face. She told me she had some suspicions and was going to get us to a
neurologist ASAP. The neurologist appt. came. He did several physical type tests, looked
and
her eyes, checked her reflexes. He held her underneath her shoulders and let her legs
dangle. They scissored. he told us that was a
characteristic of CP. He order an EEG. The EEG showed the abnormalities in her brain
waves. He then diagnosed her with CP. She is combination.
Steph is in a wheelchair. She cannot walk. She has no trunk control and weak neck/head
control. Her head often drops down, she is getting a lot stronger with keeping it held up.
She like to play game though. She will drop it down on purpose to get attention. She
doesn't have much control of her left hand/arm. She does have complete control of he right
arm/hand. Boy is she strong! Steph also suffers from seizures. Most of them go almost
unnoticeable. She has had only one grand mal seizure and that was when the Dr. tried to
lower her dose of one of the meds she takes. Steph takes Dilation and Klonopin for her
seizures. If it wasn't for the Klonopin, I would have never made it to where we are today.
It literally cut her fussiness in half. This was when she was 2 yrs old.
Stephanie LOVES to sing. Right now her favorite song/music is, "My Heart Will Go
On" by Celine Dion. She loves the soundtrack from the motion
picture, That Thing You Do, written and directed and starring Tom Hanks. She sings the
first 5 songs word for word. Steph also enjoys watching Story Time on PBS, she loves the
puppet, Kino. She asks for her Kino all of the time. Steph is getting very hard for me to
lift these days. She is about 5 ft. tall and weighs about 70 lbs. (dead weight). She
doesn't
cooperate when you pick her up. She likes to tease, she will stiffen up and laugh,
especially when I tell her to bend. She has the vocabulary of about a 5 yr old. She
also has the attitude of most pre-teens. I call her "Miss Bossy Butt". I ask her
who the boss is and she replies, ME (meaning her). Stephanie's father is not in her life,
we are divorced
and he lives in Ohio and we are in California. Steph learned many cuss words from her dad.
She thinks it is funny to say them. Here at home we
ignore her, when in public, that is hard to do and embarrassing. I have gotten to wear I
don't take her out in public much because of the cussing. Her dad seldom asks to talk to
her when he calls her brothers. She has pretty much quit asking about him. Her paternal
Grandparents never call to inquirer about any of the children. Steph however ADORES my
mother. Gramma Irene... Grandma returns the adoration, of course. Steph goes to school at
a Jr. High school from 7am to 2 pm. This is my
break time :) She loves school. She is in a special class. This is her first year in
Jr. High. Normally the kids are kept at the grade schools until age 13. Steph was sent up
a year because the teacher she has been with for about 6 years could no longer get Steph
to do much, due to the fact that her teacher had become more of a mother image. Any new
thing that Steph does or says is a miracle to me. I have so much more respect for the
"firsts" children do. We are so lucky if they have any kind of
"firsts" at all.
Story written by Steph' s mom.
Deb
Background set created by D Angel using tubes from PSP, credit if available at credits
page on D Angel's site This background set made exclusively for Stephanie and CPN.